There's been a lot of teacher bashing going on around here lately, and it's moved me to think seriously about those teachers who have touched my life in so many ways.
I always loved school. Playing school was by far my favorite thing to do during my childhood. I don't think I always wanted to BE a teacher, but of course that's how it turned out and I could not have been happier in my chosen profession.
Since I attended Catholic schools from first grade through high school, many of my teachers were nuns - all of them in full nun garb back in the 1950's and 60's. The young sister who was my first grade teacher had a total of over 70 students in a very crowded, but of course well-disciplined, classroom serving both grades one and two. I loved it - managing to pick up everything the older kids were learning as we went along.
It was my sixth grade teacher who inspired me to think I wanted to be a nun myself someday, a plan that lasted no more than a year or two, ending abruptly when boy-craziness took over and I developed one crush after another on boys in my class, boys in the neighborhood, Elvis, the Beatles, and on and on - ah, but that's another story altogether.
In my junior year of high school, Sister Sean was the one who awakened me to a love of literature and writing. She was young for sure and probably very pretty, but we didn't really pay all that much attention to things like that. What I remember most was that she set me free for the rest of my life to question the words and teachings of others. She not only said it was OK to ask questions (even about matters of faith and doctrine!), but it could be dangerous NOT to question.
I really didn't have a lot of questions at the time, and certainly no doubts about anything I was being taught. I swallowed it all, loved it all, and what I was learning was such a part of who I was at that time in my life that I had no inkling of the importance of what that dear nun was doing for me - and probably for many or most of my classmates, and all the others whose lives she touched. The questions came later when I was exposed to thinking that was very different from what I had known in the shelter of my family and parochial schools. But thanks to Sister Sean, I was ready and able to open my mind and learn from others without compromising my personal beliefs or values.
And bless them all for not standing in my way when I decided late in my senior year that I wanted to attend the University of Wisconsin in Madison, known then - and now - for its outstanding educational programs, heavy emphasis on beer drinking, and strong liberal leanings. I was warned that the campus was full of Communists who would try to win me over, but the truth is I was highly motivated to do well academically - which helped in many ways, including the ongoing temptation of all those beer parties!
Among my list of teachers who impacted my life, I must include Mrs. F. in the elementary education program at UW-Madison, who brought me to tears when she called me into her office and berated me for never speaking up in class. I still loved school and learning, but really did NOT like my education classes, and had never, ever been one to speak up in class. I much preferred writing very long term papers with lots of footnotes and a long bibliography, or studying for days to take an exam. I did NOT like courses where participation in class was considered as part of the grade. But she forced me out of my shell, where I might still be hiding if she hadn't intervened at that particular time.
It happened almost by accident that I found myself working toward certification in the area of special education and there I found many teachers who inspired me. This was a brand new area at the time, and I found it both exciting and challenging to learn about all the many ways that kids could be "special" and in need of teachers who really care about them and want them to succeed.
After I had been teaching for some time, I heard a conference presentation on the topic of "Communication as Behavior" given by a highly respected leader in the field, Anne Donnellan, and my professional life took a critical turn. It was as if she gave me the permission I needed to see my students in a different light - limited not so much in their cognitive ability as in their ability to communicate what they know. When I was later introduced to Facilitated Communication through the work of people like Rosemary Crossley, Douglas Biklen, and Marilyn Chadwick, it completed my professional transition, and gave the last ten years of my teaching career the greatest possible satisfaction.
Along the way I was blessed with wonderful mentors, outstanding paraprofessionals, supportive parents and regular education teachers, and administrators who cared enough to learn why I did what I did in my classrooms. One particular student teacher in my classroom went on to earn her Ph.D. in special education and has never stopped encouraging me to share what I have learned about this field with others. I learned from some very hard-working and compassionate school psychologists, speech therapists, and occupational and physical therapists.
Most of all, I learned from the many students who allowed me to become a part of their lives, who put up with the many mistakes I made along the way, and who will be forever in my heart. Reminds me of the line from the musical "The King and I" --- "If you become a teacher, by your pupils you'll be taught." It certainly has been true for me - no one could have taught me better.
Tuesday, March 22, 2011
Wednesday, January 5, 2011
The Real Mama Grizzlies
All the recent talk about Mama Grizzlies (ala Sarah Palin and others) got me thinking about the most awesome women (and men) I know - the parents of kids with significant "special needs."
I have been involved with this population long enough to remember when the concept of "refrigerator mothers" was commonly accepted, even among the professionals. As with so much of my early teaching years, I feel a profound need to apologize over and over again for all the damage we did with such horribly incorrect ideas. Can any of us imagine how painful it must have been for a young mother struggling to cope with a very challenging child to be told by her doctor that the problem was that she didn't really love her child? Or didn't love him/her enough? And that the only real hope was to send the child away to some institution (usually far from home) and let the "experts" raise them?
Moms - and dads and siblings - today have it considerably better, but their lives are still impacted in ways that most of us can't begin to comprehend. Little or nothing about their daily lives compares to the norm, if there really is such a thing when it comes to family life! School personnel struggle to implement needed accommodations to make a child's time away from home as conducive to learning as possible, but that's peanuts compared to what Mom, Dad and sis/bro Grizzly have been doing for years before school enters the picture. Virtually everything they do at home is an accommodation of one sort or another - sleep schedules (and disruptions, or total absence of sleep!), dietary restrictions or preferences, furniture arrangement, trampolines on the floor or swings suspended from the ceiling, disrupted or non-existent travel or holiday plans . . . it goes on and on. Parents of young kids with autism are told of the critical importance of early intervention and often pay huge sums of money for such services. But it's more than that - looking for therapists, training them, and then opening your home and family to an almost constant stream of outsiders who come to work with the child. It's one of the few things that people in the autism community agree upon - early intervention helps, but at what expense? And what if a particular family just can't manage it?
I recently listened to a panel of moms of kids with autism share some of their more painful memories of the difficulties they have faced in the home, school, community, or place of worship. Some have learned of school practices bordering on abuse, some have moved - often more than once - to find better services for their child. Married couples have lived apart for years so that one could work and the other could live in a school district that might better meet the needs of their child. And of course, many couples could not survive the pressure and stress and found divorce to be the only option. Then there are the effects on siblings. Often overlooked in the chaos that ensues when family life revolves around one particularly needy member, they might withdraw, or act out, or take on more than they can handle in the way of responsibility - all of which adds to the stress and guilt experienced by the parents.
It doesn't end when a child graduates from high school. In fact, that's probably what's been on the parents' minds from Day One - on those rare occasions when they find time to think! What happens then? And what happens when/if we are no longer here to help?
I worked in the schools, mostly at the elementary level, and I observed first-hand some significant progress in how we developed programs to meet the special needs of even the most challenging students. Now I find myself spending time with families who have adult children in need of services, and I know there is a rapidly growing number of these individuals who will soon be leaving the school setting. We are woefully unprepared to meet their needs. We owe them - and their awesome families - a whole lot more!
I have been involved with this population long enough to remember when the concept of "refrigerator mothers" was commonly accepted, even among the professionals. As with so much of my early teaching years, I feel a profound need to apologize over and over again for all the damage we did with such horribly incorrect ideas. Can any of us imagine how painful it must have been for a young mother struggling to cope with a very challenging child to be told by her doctor that the problem was that she didn't really love her child? Or didn't love him/her enough? And that the only real hope was to send the child away to some institution (usually far from home) and let the "experts" raise them?
Moms - and dads and siblings - today have it considerably better, but their lives are still impacted in ways that most of us can't begin to comprehend. Little or nothing about their daily lives compares to the norm, if there really is such a thing when it comes to family life! School personnel struggle to implement needed accommodations to make a child's time away from home as conducive to learning as possible, but that's peanuts compared to what Mom, Dad and sis/bro Grizzly have been doing for years before school enters the picture. Virtually everything they do at home is an accommodation of one sort or another - sleep schedules (and disruptions, or total absence of sleep!), dietary restrictions or preferences, furniture arrangement, trampolines on the floor or swings suspended from the ceiling, disrupted or non-existent travel or holiday plans . . . it goes on and on. Parents of young kids with autism are told of the critical importance of early intervention and often pay huge sums of money for such services. But it's more than that - looking for therapists, training them, and then opening your home and family to an almost constant stream of outsiders who come to work with the child. It's one of the few things that people in the autism community agree upon - early intervention helps, but at what expense? And what if a particular family just can't manage it?
I recently listened to a panel of moms of kids with autism share some of their more painful memories of the difficulties they have faced in the home, school, community, or place of worship. Some have learned of school practices bordering on abuse, some have moved - often more than once - to find better services for their child. Married couples have lived apart for years so that one could work and the other could live in a school district that might better meet the needs of their child. And of course, many couples could not survive the pressure and stress and found divorce to be the only option. Then there are the effects on siblings. Often overlooked in the chaos that ensues when family life revolves around one particularly needy member, they might withdraw, or act out, or take on more than they can handle in the way of responsibility - all of which adds to the stress and guilt experienced by the parents.
It doesn't end when a child graduates from high school. In fact, that's probably what's been on the parents' minds from Day One - on those rare occasions when they find time to think! What happens then? And what happens when/if we are no longer here to help?
I worked in the schools, mostly at the elementary level, and I observed first-hand some significant progress in how we developed programs to meet the special needs of even the most challenging students. Now I find myself spending time with families who have adult children in need of services, and I know there is a rapidly growing number of these individuals who will soon be leaving the school setting. We are woefully unprepared to meet their needs. We owe them - and their awesome families - a whole lot more!
Tuesday, December 14, 2010
Feeling competent
This is a lesson learned very recently. I have just finished ordering, unpacking, and setting up a brand new desktop computer. At the moment, I have three computers I am juggling, trying to find documents, mailing lists, blogs, etc. that are saved somewhere and need to be moved so I can get at them. What I want to share is the sheer exhilaration I felt when I realized that I had managed to get things up and running, with Internet access, ALL BY MYSELF!
Maybe you remember a child's book with that title, or at least that theme. Maybe you still read that book to someone in your life. Maybe, like me, you really haven't given the topic much thought lately. I don't think it hurts any of us to stop and think how great it feels to accomplish a task (simple or complex, techy or not) without needing help.
For a full day and then some after my computer was fully functioning, I just had to mention to anyone who would listen that I had really done it! I was glowing in self-satisfaction. It felt (and still feels) wonderful.
Let's think about the people in our lives who are greatly limited in what they can do for themselves. Let's think about the IEP's we write for kids in school, all too often focusing on the deficit model. We discuss the PLOP (present level of performance) and then quickly move on to everything that needs fixing, and that list becomes the tasks we work on at school and at home. Personally, I can't think of anything more discouraging than spending a day with folks who know all my weaknesses and, with the best of intentions, set about helping me to "improve."
What if we started with strengths, provided numerous opportunities for success, and then ever so slowly introduced something a little more challenging?
Since I look at just about every area of disability as motor-related, rather than cognitive (i.e. making the least dangerous assumption), I DON'T mean dumbing down the curriculum. In fact, I really mean just the opposite. Move the level of instruction forward and upward just as fast as possible, but keep the motor response needed to show understanding well within the person's physical abilities. KEEP IT SIMPLE when it comes to the actual "work." Let them experience success.
We are always trying to find the perfect balance between academics and functional life skills when we are talking about kids with disabilities, especially if they are more severely impacted by their condition. Independence in activities of daily living also gives one a huge sense of satisfaction or competence, so we don't ever want to do for someone what they can do for themselves, and don't want them to fall into "learned helplessness" because someone is always there to help. But I vote for Velcro shoes over struggling to learn to tie and loose fitting clothes that are more easily managed, whatever it takes to allow a person to do as much for themselves as they possibly can - minus the frustration of endless drill on the task.
Back to my latest "aha" moment. With all my success in this new tech adventure, I would be remiss if I didn't offer thanks to the people in my life who have so patiently answered my questions and talked me through an area that was very, very foreign to me in the beginning. This would include our school tech person, my own kids and grandkids (who know so much more than I do!), some marvelous "geeks" who tactfully took me from my starting point and gently nudged me forward, and even a couple strangers over in India or Pakistan who work for Dell or Microsoft or whomever.
Lesson for all of us: How do we help kids learn? Do we make them feel successful and competent every step of the way? Can we celebrate with them when they are successful and overlook all the mistakes along the way? Learning seems to work so much better in a positive environment. What can we do to make sure our kids always have this feeling of competence?
Maybe you remember a child's book with that title, or at least that theme. Maybe you still read that book to someone in your life. Maybe, like me, you really haven't given the topic much thought lately. I don't think it hurts any of us to stop and think how great it feels to accomplish a task (simple or complex, techy or not) without needing help.
For a full day and then some after my computer was fully functioning, I just had to mention to anyone who would listen that I had really done it! I was glowing in self-satisfaction. It felt (and still feels) wonderful.
Let's think about the people in our lives who are greatly limited in what they can do for themselves. Let's think about the IEP's we write for kids in school, all too often focusing on the deficit model. We discuss the PLOP (present level of performance) and then quickly move on to everything that needs fixing, and that list becomes the tasks we work on at school and at home. Personally, I can't think of anything more discouraging than spending a day with folks who know all my weaknesses and, with the best of intentions, set about helping me to "improve."
What if we started with strengths, provided numerous opportunities for success, and then ever so slowly introduced something a little more challenging?
Since I look at just about every area of disability as motor-related, rather than cognitive (i.e. making the least dangerous assumption), I DON'T mean dumbing down the curriculum. In fact, I really mean just the opposite. Move the level of instruction forward and upward just as fast as possible, but keep the motor response needed to show understanding well within the person's physical abilities. KEEP IT SIMPLE when it comes to the actual "work." Let them experience success.
We are always trying to find the perfect balance between academics and functional life skills when we are talking about kids with disabilities, especially if they are more severely impacted by their condition. Independence in activities of daily living also gives one a huge sense of satisfaction or competence, so we don't ever want to do for someone what they can do for themselves, and don't want them to fall into "learned helplessness" because someone is always there to help. But I vote for Velcro shoes over struggling to learn to tie and loose fitting clothes that are more easily managed, whatever it takes to allow a person to do as much for themselves as they possibly can - minus the frustration of endless drill on the task.
Back to my latest "aha" moment. With all my success in this new tech adventure, I would be remiss if I didn't offer thanks to the people in my life who have so patiently answered my questions and talked me through an area that was very, very foreign to me in the beginning. This would include our school tech person, my own kids and grandkids (who know so much more than I do!), some marvelous "geeks" who tactfully took me from my starting point and gently nudged me forward, and even a couple strangers over in India or Pakistan who work for Dell or Microsoft or whomever.
Lesson for all of us: How do we help kids learn? Do we make them feel successful and competent every step of the way? Can we celebrate with them when they are successful and overlook all the mistakes along the way? Learning seems to work so much better in a positive environment. What can we do to make sure our kids always have this feeling of competence?
Friday, October 22, 2010
Report on Autcom 2010
It was a dream come true. My friends from Autcom gathered here in my home state of Wisconsin to share their stories. I might have dreamed that thousands would show up to participate, but that would have been more than a little unrealistic. The actual number was probably somewhere between 100 and 200, but the energy generated by this small but enthusiastic crowd was truly exhilarating. Rather than repeat my comments from last year's Autcom gathering, may I suggest that you look back in this blog for postings from September and October 2009.
This year was special to me personally for many reasons. Bringing the event to Milwaukee was a highlight, for sure, and I am eternally grateful to Sandi McClennen, Judy Endow and Jane Pribek for making it happen - and happen as well as it did! I was also able to participate in the selection of presentations and tried throughout the process to find the right balance of topics and speakers so as to best meet the needs of everyone on the autism spectrum who might want to attend. We've gotten lots of positive feedback and that feels good. Hard work pays off - usually! Thanks also to people like Michael McClennen and Phil Schwarz for all their efforts to keep us connected and operational!
I know two of the keynote speakers quite well and have heard them speak in the past, so I was not at all surprised with the topnotch quality of what Judy Endow and Paula Kluth had to share with the group. I was, however, new to the ideas and experiences of Suzanne Oliver, who talked about the importance of rhythm in the lives of people with autism. Seeing some of her techniques in action with people I know who struggle with movement differences was very powerful. See more at: www.nmtsa.org
It was a thrill to share in the debut of two books by local authors and very good friends. Sally Young's book "Real People, Regular Lives" tells in great detail some of the many success stories of those who have found a voice by using Facilitated Communication. Roy Bedward's book "Communication Makes or Breaks a Life" is a beautiful compilation of his art, poetry and prose. I am so proud to know both of these people and so grateful for the contribution they are making to a better understanding of autism.
From nearby Iowa, DJ Savarese came to share with us the work he is doing, along with Rob Rooy (Rooy Media) to produce a documentary of DJ's life as a high school student who types to communicate - and certainly has a lot to say! DJ's story has been told in book form also ("Reasonable People").
I wasn't able to attend myself, but I heard that Nick Pentzell and Jacob Pratt did an outstanding job of educating and entertaining those who were present at their session, which they entitled, "Rated 'R': That Oh-So-Difficult-Topic."
And so many more concurrent sessions - as always, it's impossible to participate in all of them.
I was privileged to read to the audience a letter I had received from a friend in Canada (see previous blog, dated earlier today) and doubly privileged to serve as moderator for a panel presentation that included DMan Johnson, DJ Savarese, and Daniel McConnell. All three of these young men have had their lives changed dramatically by their access to Facilitated Communication, and those in attendance were kept spellbound by the profound thoughts they had to share. I know Daniel quite well, and was especially proud of his ability to "speak" in front of a group in this way and then take questions from the audience - once again, helping all of us to move forward in our understanding of autism. DJ has now become a seasoned presenter, but it's relatively new for Daniel and DMan - all three did an outstanding job. They stressed the importance of believing in people who are unable to speak, along with being very persistent and never giving up.
Earlier, I had the opportunity to introduce Roy Bedward (See above description of his new book and blog posts from 11/1/09 and 7/18/10)and knew he would do a great job with his PowerPoint story of his life. What Roy likes best is the opportunity to take questions from the audience. It was a thrill to hear that a presentation he gave over two years ago has had a life-changing effect on a young man whose speech therapist was moved by what Roy had to say! Exciting also to hear him give encouragement to a person supporting someone who is nonverbal and learned to type almost 20 years ago, but has not typed for some eight years now. That same young man typed two full sentences with me personally the next day. We can make this work!
I was very proud of two of my young friends who were able to attend the whole conference and will no doubt someday soon be giving presentations themselves. I give lots of credit to their families for making this possible, as well as the hotel staff and conference planners who made the environment very autism-friendly.
I will write in a future blog some of my thoughts about a very special panel presentation given by some of the autism moms I know. They chose a roundtable format to talk candidly about some of the frustrations (and joys) involved in finding the right supports and services for a child - or adult - who is nonverbal. A very difficult topic that needs a lot more attention.
While I found myself totally exhausted once the conference had ended, I really did want it to go on forever. I do hope even more of you will be able to participate in the future.
This year was special to me personally for many reasons. Bringing the event to Milwaukee was a highlight, for sure, and I am eternally grateful to Sandi McClennen, Judy Endow and Jane Pribek for making it happen - and happen as well as it did! I was also able to participate in the selection of presentations and tried throughout the process to find the right balance of topics and speakers so as to best meet the needs of everyone on the autism spectrum who might want to attend. We've gotten lots of positive feedback and that feels good. Hard work pays off - usually! Thanks also to people like Michael McClennen and Phil Schwarz for all their efforts to keep us connected and operational!
I know two of the keynote speakers quite well and have heard them speak in the past, so I was not at all surprised with the topnotch quality of what Judy Endow and Paula Kluth had to share with the group. I was, however, new to the ideas and experiences of Suzanne Oliver, who talked about the importance of rhythm in the lives of people with autism. Seeing some of her techniques in action with people I know who struggle with movement differences was very powerful. See more at: www.nmtsa.org
It was a thrill to share in the debut of two books by local authors and very good friends. Sally Young's book "Real People, Regular Lives" tells in great detail some of the many success stories of those who have found a voice by using Facilitated Communication. Roy Bedward's book "Communication Makes or Breaks a Life" is a beautiful compilation of his art, poetry and prose. I am so proud to know both of these people and so grateful for the contribution they are making to a better understanding of autism.
From nearby Iowa, DJ Savarese came to share with us the work he is doing, along with Rob Rooy (Rooy Media) to produce a documentary of DJ's life as a high school student who types to communicate - and certainly has a lot to say! DJ's story has been told in book form also ("Reasonable People").
I wasn't able to attend myself, but I heard that Nick Pentzell and Jacob Pratt did an outstanding job of educating and entertaining those who were present at their session, which they entitled, "Rated 'R': That Oh-So-Difficult-Topic."
And so many more concurrent sessions - as always, it's impossible to participate in all of them.
I was privileged to read to the audience a letter I had received from a friend in Canada (see previous blog, dated earlier today) and doubly privileged to serve as moderator for a panel presentation that included DMan Johnson, DJ Savarese, and Daniel McConnell. All three of these young men have had their lives changed dramatically by their access to Facilitated Communication, and those in attendance were kept spellbound by the profound thoughts they had to share. I know Daniel quite well, and was especially proud of his ability to "speak" in front of a group in this way and then take questions from the audience - once again, helping all of us to move forward in our understanding of autism. DJ has now become a seasoned presenter, but it's relatively new for Daniel and DMan - all three did an outstanding job. They stressed the importance of believing in people who are unable to speak, along with being very persistent and never giving up.
Earlier, I had the opportunity to introduce Roy Bedward (See above description of his new book and blog posts from 11/1/09 and 7/18/10)and knew he would do a great job with his PowerPoint story of his life. What Roy likes best is the opportunity to take questions from the audience. It was a thrill to hear that a presentation he gave over two years ago has had a life-changing effect on a young man whose speech therapist was moved by what Roy had to say! Exciting also to hear him give encouragement to a person supporting someone who is nonverbal and learned to type almost 20 years ago, but has not typed for some eight years now. That same young man typed two full sentences with me personally the next day. We can make this work!
I was very proud of two of my young friends who were able to attend the whole conference and will no doubt someday soon be giving presentations themselves. I give lots of credit to their families for making this possible, as well as the hotel staff and conference planners who made the environment very autism-friendly.
I will write in a future blog some of my thoughts about a very special panel presentation given by some of the autism moms I know. They chose a roundtable format to talk candidly about some of the frustrations (and joys) involved in finding the right supports and services for a child - or adult - who is nonverbal. A very difficult topic that needs a lot more attention.
While I found myself totally exhausted once the conference had ended, I really did want it to go on forever. I do hope even more of you will be able to participate in the future.
Guest Blog - from Aaron to his friends at Autcom
A message from Aaron Greenwood, Alberta, Canada
Age 13; Grade in school: 7
Using FC with his mom, Suzanne
autcom conference 2010
hello everyone ,
i am so happy to have this opportunity upon me to share my thoughts on autism . only on my diagnosis did my life truly sail on to disaster . i was a happy child. now i remember much of my childhood on my family farm . it was a life just like many kids. lots of love and kindness was shown to me.
in freedom i was home . i gave my family a lot of credit for accepting me as i was, not wanting another child . usually my life was happy. now never was there sadness . upon my diagnosis my life changed as lots of people tried to change who i was . i did not want to be changed. most great, just people really realize every autistic person dearly wants only to be free. realizing who they are is a gift from god . the truth is realizing that your child is truly special . not created as broken but created as loving, capable, truly gifted people . god dares to create all of us, perfectly free to be his children. until we realize he does not create garbage, but only gifts of his love, will we ever understand autism . free only to dare to be different ok .
i was never ok with being treated like i needed to change . it is a horrible reality only to have people in power treat you like an object only without asking you or respecting you . in my life my parents always treated me with respect, only in my life outside my home was it different . i have had many people speak for me in my life. i needed only to be listened to . just need people to in love, respect in love. in love only kindness should be your true, just kings of your life . i am so happy to be treated as an intelligent person with much to say in the world . i must emphasize to all parents and caregivers to remember the person inside the body of autism, only love will be treated as ok . of just anyone who feels they must treat us with disrespect, then leave us alone . kindness is shown in respect dear loving family members and friends . love us as we are, not as who you want us to be . kindness is god's way. not realizing who we are in this world is not in god's plan for us all .
fc has been a just wonderful freeing gift. a great tool for me to realize my thoughts and beliefs . i am so most happy to have this form of communication available to me in my world. it has opened up my great voice . in my world, without fc, it was dark and freedom less. i was so lost and alone in my ever sad world . i am so thankful to have char* teach me and my family the importance of fc in the lives of autistic people. in many ways it is so much responsible for where i am today . i also thank gail** for being the first person to show really how wonderful i am in this world . these two people mean so much to me and my family .
i truly think that in this world there is too much hate and truly angry people . only in love can we heal this world. love is the only way . autism is not a curse, not a life ender, not a life killer . i hope to let all of you know that my life has a purpose, a plan, a life's longing to be a part of this world . kindly remember that reality for some is not a reality for others. only that we must respect everyone's place in this world . only then will we lovingly, fantastically, joyfully, freely be allowed to live together . upon my end of my letter thank you for listening to me. kind of you to take the time to hear my ideas .
your friend ,
aaron greenwood
• * Char Brandl (Wisconsin)
• ** Gail Gillingham (Alberta)
• Unedited, except to add some breaks for paragraphs
Age 13; Grade in school: 7
Using FC with his mom, Suzanne
autcom conference 2010
hello everyone ,
i am so happy to have this opportunity upon me to share my thoughts on autism . only on my diagnosis did my life truly sail on to disaster . i was a happy child. now i remember much of my childhood on my family farm . it was a life just like many kids. lots of love and kindness was shown to me.
in freedom i was home . i gave my family a lot of credit for accepting me as i was, not wanting another child . usually my life was happy. now never was there sadness . upon my diagnosis my life changed as lots of people tried to change who i was . i did not want to be changed. most great, just people really realize every autistic person dearly wants only to be free. realizing who they are is a gift from god . the truth is realizing that your child is truly special . not created as broken but created as loving, capable, truly gifted people . god dares to create all of us, perfectly free to be his children. until we realize he does not create garbage, but only gifts of his love, will we ever understand autism . free only to dare to be different ok .
i was never ok with being treated like i needed to change . it is a horrible reality only to have people in power treat you like an object only without asking you or respecting you . in my life my parents always treated me with respect, only in my life outside my home was it different . i have had many people speak for me in my life. i needed only to be listened to . just need people to in love, respect in love. in love only kindness should be your true, just kings of your life . i am so happy to be treated as an intelligent person with much to say in the world . i must emphasize to all parents and caregivers to remember the person inside the body of autism, only love will be treated as ok . of just anyone who feels they must treat us with disrespect, then leave us alone . kindness is shown in respect dear loving family members and friends . love us as we are, not as who you want us to be . kindness is god's way. not realizing who we are in this world is not in god's plan for us all .
fc has been a just wonderful freeing gift. a great tool for me to realize my thoughts and beliefs . i am so most happy to have this form of communication available to me in my world. it has opened up my great voice . in my world, without fc, it was dark and freedom less. i was so lost and alone in my ever sad world . i am so thankful to have char* teach me and my family the importance of fc in the lives of autistic people. in many ways it is so much responsible for where i am today . i also thank gail** for being the first person to show really how wonderful i am in this world . these two people mean so much to me and my family .
i truly think that in this world there is too much hate and truly angry people . only in love can we heal this world. love is the only way . autism is not a curse, not a life ender, not a life killer . i hope to let all of you know that my life has a purpose, a plan, a life's longing to be a part of this world . kindly remember that reality for some is not a reality for others. only that we must respect everyone's place in this world . only then will we lovingly, fantastically, joyfully, freely be allowed to live together . upon my end of my letter thank you for listening to me. kind of you to take the time to hear my ideas .
your friend ,
aaron greenwood
• * Char Brandl (Wisconsin)
• ** Gail Gillingham (Alberta)
• Unedited, except to add some breaks for paragraphs
Friday, September 24, 2010
Working Our Way Through Things
It's a perfect blending of my personal "lessons learned" - reliving with one of my grandkids something I have experienced over and over again with those I have worked with who struggle with what we call a "disability" but is really more like a "different way of experiencing the world."
Our three-year-old granddaughter is at a new preschool this year. She's always been a happy, easy-going child who is able to find ways to entertain herself - an "easy" child to care for and love. For a variety of reasons - lots of fun time with her family over the summer, followed by having both parents suddenly VERY busy with other demands in their lives and of course an entirely new setting where she would be expected to spend some very long days on her own - this particular transition has not gone well at all.
I was called two days in a row to come and pick her up because she was running a slight fever, not eating, and crying all the time. But as soon as I arrived, she perked up, and once we got home she did nothing but eat and chatter nonstop for at least a good hour, before moving on to play with her favorite toys as though nothing was wrong at all.
Bless those preschool teachers, who undoubtedly have seen it all. They could see we needed to change this pattern as quickly as possible. Those of you who have kids with autism will no doubt relate to what has helped - and all of us can learn from the experience.
First of all, we established that they would NOT be calling Grandma if she isn't "feeling well" and then they made up a visual schedule (love it!) of the day's activities so that she would know what was going to be happening and just how many more things were planned before pick-up time. She's a talker by nature, so once they could get her to stop crying they could start helping her talk things through.
And she does need to talk things through, over and over again. On the weekends, she established a play routine that went on for hours. Using a special teddy bear, she would bring her "baby" to me, the "teacher," and gently say good-bye, reminding her baby that she'd be back to pick him/her up after nap time. And she'd walk to another part of our house. She didn't really care what I did next, so I could read the paper or whatever, but I DID have to put the teddy bear down for a nap when she was ready to return for the loving reunion.
I can't tell you how many times we repeated this scenario, but it extended over at least three weekends - and it has worked. Things are going much better, and I know she is going to be just fine.
Now, what if she weren't able (at age three, or at any age!) to speak. How could she possibly find a way to work through all the anxiety, fear, sadness, loneliness, whatever?
I think about the many kids I have known over the years with autism, Down syndrome, or other conditions that cause serious problems with communication. So very many of them developed what we see as repetitive behaviors (or even "obsessions") and I am sad to say there have been times when we (the parents or professionals, those in the know!) thought this was unacceptable social behavior and tried to remove it from their repertoire. (My humble apologies to all those kids!)
Think about the kids who wear out VCR or DVD players by playing a favorite video over and over again, or the ones who have to see every single Thomas the Tank Engine story. I had one boy who collected Berenstain Bear books. He didn't always need us to read them to him, but did seem to find great comfort in spreading them out, touching them lovingly, and even going from one room to another in our school to seek out any that he hadn't yet seen and touched. Whether it's Sesame Street, Blue's Clues, the Muppets, Disney videos or Thomas, there must be SOMETHING that helps our kids cope with the world around them, something in the message, or something in the repetition.
May I suggest that we don't really have to figure out precisely what attracts them. It is enough to accept that there is something special going on and then let them use these special tools to work through whatever they might be struggling with at the time.
I would love to have others share their personal stories about "useful obsessions" :-)
Our three-year-old granddaughter is at a new preschool this year. She's always been a happy, easy-going child who is able to find ways to entertain herself - an "easy" child to care for and love. For a variety of reasons - lots of fun time with her family over the summer, followed by having both parents suddenly VERY busy with other demands in their lives and of course an entirely new setting where she would be expected to spend some very long days on her own - this particular transition has not gone well at all.
I was called two days in a row to come and pick her up because she was running a slight fever, not eating, and crying all the time. But as soon as I arrived, she perked up, and once we got home she did nothing but eat and chatter nonstop for at least a good hour, before moving on to play with her favorite toys as though nothing was wrong at all.
Bless those preschool teachers, who undoubtedly have seen it all. They could see we needed to change this pattern as quickly as possible. Those of you who have kids with autism will no doubt relate to what has helped - and all of us can learn from the experience.
First of all, we established that they would NOT be calling Grandma if she isn't "feeling well" and then they made up a visual schedule (love it!) of the day's activities so that she would know what was going to be happening and just how many more things were planned before pick-up time. She's a talker by nature, so once they could get her to stop crying they could start helping her talk things through.
And she does need to talk things through, over and over again. On the weekends, she established a play routine that went on for hours. Using a special teddy bear, she would bring her "baby" to me, the "teacher," and gently say good-bye, reminding her baby that she'd be back to pick him/her up after nap time. And she'd walk to another part of our house. She didn't really care what I did next, so I could read the paper or whatever, but I DID have to put the teddy bear down for a nap when she was ready to return for the loving reunion.
I can't tell you how many times we repeated this scenario, but it extended over at least three weekends - and it has worked. Things are going much better, and I know she is going to be just fine.
Now, what if she weren't able (at age three, or at any age!) to speak. How could she possibly find a way to work through all the anxiety, fear, sadness, loneliness, whatever?
I think about the many kids I have known over the years with autism, Down syndrome, or other conditions that cause serious problems with communication. So very many of them developed what we see as repetitive behaviors (or even "obsessions") and I am sad to say there have been times when we (the parents or professionals, those in the know!) thought this was unacceptable social behavior and tried to remove it from their repertoire. (My humble apologies to all those kids!)
Think about the kids who wear out VCR or DVD players by playing a favorite video over and over again, or the ones who have to see every single Thomas the Tank Engine story. I had one boy who collected Berenstain Bear books. He didn't always need us to read them to him, but did seem to find great comfort in spreading them out, touching them lovingly, and even going from one room to another in our school to seek out any that he hadn't yet seen and touched. Whether it's Sesame Street, Blue's Clues, the Muppets, Disney videos or Thomas, there must be SOMETHING that helps our kids cope with the world around them, something in the message, or something in the repetition.
May I suggest that we don't really have to figure out precisely what attracts them. It is enough to accept that there is something special going on and then let them use these special tools to work through whatever they might be struggling with at the time.
I would love to have others share their personal stories about "useful obsessions" :-)
Tuesday, August 3, 2010
Thoughts on Inclusion
Two recent articles in the New York Times caught my attention, and have given me lots to think about. I'd love to hear what you think also.
Most recently, my home town ("adopted" in our retirement years) - Madison, Wisconsin - was featured as "A School District That Takes the Isolation Out of Autism" - 8/01/10. I don't really have anything to do with the school system at the present time, but I do know one of the families included in the story and I am very proud to support the Madison Public Schools in their efforts. (That includes paying our taxes willingly, high as they might be!)
I happen to be a big believer in the value of full inclusion, but always with the caveat that it will only be successful if it is done correctly. And along with the theme of my blog, I do feel we've made many mistakes along the way. Hopefully, Madison and other districts have learned and are doing all they can to do it right, in spite of all the obstacles that are sure to be there - declining funding, budget cuts, lots of misunderstanding, lack of adequate staff training, and on and on.
Proper supports must be in place and each student's situation must be assessed for his/her unique needs in the school setting. Inclusion doesn't have to be - and really should NOT be - an all-or-none situation. Finding the right balance between time in the regular classroom and time away from that setting for more individualized programming, or "down" time to help those with sensory issues or anxiety problems, is one of the keys to making inclusion work.
Most of the students I worked with needed full-time adult support in all school environments, but of course that isn't true for everyone. Obviously finding the best match between student and educational support person makes a huge difference; so does helping that support person know just when/how/how much support to provide, so as not to bring on learned helpnessness.
Most recently, my home town ("adopted" in our retirement years) - Madison, Wisconsin - was featured as "A School District That Takes the Isolation Out of Autism" - 8/01/10. I don't really have anything to do with the school system at the present time, but I do know one of the families included in the story and I am very proud to support the Madison Public Schools in their efforts. (That includes paying our taxes willingly, high as they might be!)
I happen to be a big believer in the value of full inclusion, but always with the caveat that it will only be successful if it is done correctly. And along with the theme of my blog, I do feel we've made many mistakes along the way. Hopefully, Madison and other districts have learned and are doing all they can to do it right, in spite of all the obstacles that are sure to be there - declining funding, budget cuts, lots of misunderstanding, lack of adequate staff training, and on and on.
Proper supports must be in place and each student's situation must be assessed for his/her unique needs in the school setting. Inclusion doesn't have to be - and really should NOT be - an all-or-none situation. Finding the right balance between time in the regular classroom and time away from that setting for more individualized programming, or "down" time to help those with sensory issues or anxiety problems, is one of the keys to making inclusion work.
Most of the students I worked with needed full-time adult support in all school environments, but of course that isn't true for everyone. Obviously finding the best match between student and educational support person makes a huge difference; so does helping that support person know just when/how/how much support to provide, so as not to bring on learned helpnessness.
A few direct quotes from the article:
"Families with children with autism and developmental disabilities move from all over the country for the Madison schools." (Three families who have done just that are featured in the article).
"While it costs Madison $23,000 to educate a child with autism (to pay for extra support staff members) versus $12,000 for a typical child, Colleen Capper, a University of Wisconsin professor, said inclusion was cheaper than segregating students." I am not sure which part of this will be harder for most people to swallow - how much it costs for inclusion or the fact that it's more costly yet to go back to the old model. Our schools are hurting; they need our support!
"Madison is changing, however: an influx of poor children, a migration of wealthier families to the suburbs. Parents of the gifted recently petitioned for more honors classes . . . . " One parent is quoted as saying, "I am not convinced that even the most masterful teacher --- and we have many of them here in Madison --- can teach effectively to the full range of ability and need we currently have in our public schools. Not at the same time in the same classroom." I certainly would agree with that.
It's also tricky - and important - to find the right balance between an emphasis on teaching what we call "functional life skills" and the usual academics. The second article (which actually appeared earlier, on June 19, 2010) illustrates this quite dramatically. The headline reads, "Schools Struggle to Educate the Severely Disabled" and the article focuses on a young man named Donovan, age 20, who is about to leave the public school system in New York City. Donovan suffered a tragic accident as an infant and has significant multiple disabilities as a result.
Donovan - and others like him - are entitled to a free, public education as a result of federal legislation that has been in effect since 1975. But schools differ widely on just what services are offered and what is considered "education" for those whose abilities are as limited as Donovan's. He "recognizes familiar voices, and can mimic their intonations. He communicates some needs; at lunch, he pulls off his bib to show when he is finished. When happy, he sings fragmented notes, his scratchy voice rising in triplets and quads. But he cannot walk, does not speak and cannot feed himself or see much beyond shapes and shadows. On standardized assessments, he has trouble with tasks most children master in infancy . . . . he does not respond consistently to his own name."
Perhaps most significantly, when it comes to what is written in his Individual Educational Plan (IEP), "(t)he problem is that after 15 years of education, he has not learned how to do most of those things (skills targeted in the plan) reliably."
In many ways, Donovan is luckier than most. He has a mother who loves him and is happy because he seems happy - although she is unable to care for him at home. He has a teacher who "uses all of his creativity to adapt the lessons, writing his own books, using symbols, pictures and words" --- even though he is a first-year teacher. He has a principal who is willing to think outside the box, and whose goal for students like Donovan is to "strike a balance between functional and academic instruction, focusing on what is really important: the skills that Donovan willl need to help communicate to caregivers in the years ahead."
And along the way, Donovan had a very special educational assistant, who worked with him one-on-one for four years and forged a special connection, using a combination of tickles, head-rubs, and music to reach this particular student as no one else has been able to do. "He understands very well, quite as much as you and I do. If he could talk, and he could see, he could express himself a little bit better," says this dedicated (and undoubtedly underpaid!) "aide."
During my years of teaching, I worked in a residential facility, a segrated school, segregated classrooms in regular schools, and inclusive settings with varying levels of success. While those of us who are trained to be "special" educators and who CHOOSE to work in these settings might have the best interest of the kids at heart, and might be truly dedicated to what we do, we simply can't match the impact of having "typical" peers around on a regular basis and there is no way we can provide the intelllectual stimulation and challenge that is provided by the "regular" curriculum in the "regular" class setting.
If we think about kids like Donovan, we must meet their basic physical needs, and then their all-important needs for safety, security, acceptance and belonging. We must do all we can to provide an effective, meaningful means of communication, and we MUST continue to challenge them intellectually - regardless of the present level of performance or any measure of assumed cognitive ability.
We have misunderstood and vastly underestimated far too many kids for far too long. They deserve much better from our school programs.
Think, if you will, of Helen Keller. There are many more like her who are being missed completely.
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